Killing Frenzy from our CAR-T comic book
I received my CAR-T cells on March 22, a Thursday, so Thursdays, every 7 days, are my days of reckoning when I get tested for just about everything imaginable. And, yesterday, April 19, was the 4th Thursday since my infusion so I got my CT scans and bone marrow biopsy for my restaging my CLL.
As you know the killing frenzy unleashed by the expanding numbers of CAR-T cells released massive levels of cytokines (inflammatory chemicals) that made me very sick and I am still anemic and achy.
But the killing frenzy is over….. because there is no cancer left to seek and destroy. No targets for the CAR-Ts to strangle.
My news is near perfect.
The CT scan done yesterday showed complete resolution of all the lymphadenopathy (enlarged lymph nodes) in my neck, chest and axillae, and “near complete” resolution in the abdomen and pelvis.
” Near complete” is not a worry. It is in fact, amazingly wonderful news. My largest indexed node was found in the left groin and measured 1.6 x 1.4 cm. It had been 3.8 x 3.1 cm before treatment.
Most CLL experts would say anything under 2 cm is normal. All say 1.5 cm is fine. My millimeter bigger node could be from scarring or from some persistent T cell activity. Some nodes never go back to normal. They stay enlarged and when biopsied, show scarring snd inflammation, but no cancer. I am convinced that my chronic lymphocytic leukemia has been chased out of my entire lymphatic system. A month ago I had “multiple enlarged nodes” from my CLL everywhere. Not now. And that is the most difficult area to rid the body of CLL with any cellular therapy as the cells need to penetrate to the cancer deep in the enlarged nodes.
But wait there is more!
My bone marrow biopsy was MRD (minimal residual disease) negative. That means no CLL found at a depth of 1 in 10,000 cells. They were 40% of the marrow a month ago. I am still waiting for the full biopsy report and they will do even deeper sequencing to look for CLL but I am confident that too will be negative. The drop in my hemoglobin was because my marrow was under siege, inflamed and in no mood to made red cells due to the onslaught of the serial killing CAR-T cells. I am sure they left no survivors.
When I got the call, the endorphin release from the life changing positive news took away all the pain from my knees for a few hours. I think I should have my provider call me several times a day to remind me of the joy of being cancer free.
And there is still more. On day 21 (another multiple of 7) I had a persistent healthy population of engineered T-cells hanging around in my blood, looking to kill any straggling CD19+ CLL cells. The CAR-T cells had survived the two heavy slugs of steroids (dexamethasone) that brought me back to life when I was far gone in a world of pain, fever, confusion, and immobility.
Steroids kill T-cells, but in my case, not nearly all on them.
The one piece of bad news is that I developed a small asymptomatic blood clot in my lung (pulmonary embolism or PE), likely from not moving my legs and begin in such a hyper-coagulable when in the middle of my cytokine storm. Doppler studies today showed no residual thrombus (blood clot) in either leg or in my right arm where I have a PICC line (an indwelling venous catheter used for all my blood draws and infusions) that can lead to blood clots. So the risk of recurrence and complications is low.
I give myself two shots a day of low molecular weight heparin (Lovenox) to prevent the PE from becoming a real problem. The pain and bruising is minor, but there is concern of increased bleeding risk with these of any blood thinner with ibrutinib, but the combination with Lovenox is thought to pretty safe.
I wil take a blood clot and sore knees over cancer any day.
Time to celebrate.
Patty and I out to Celebrate Our Great News